Living Rather Than Wallowing

I needed to see someone who looked like me.

“Your x-rays still show no new bone growth on either foot so we can rule out a stress fracture. Your bloodwork, however, was much more revealing. Your rheumatoid factor is a 68; it should be less than 20. Your CRP and ESR are also elevated. These results, in conjunction with symmetrical joint swelling in your feet and hands all point strongly to rheumatoid arthritis.”

Blink.

“I’m going to start you on several medications today. Celebrex for pain. Prednisone is a steroid that we’re going to start you on a high level and taper you down. This will reduce the inflammation while the other medications start to work. Methotrexate is a chemotherapy drug. It can have some pretty nasty side effects so we’re going to start you low and build you up to 8 a week. I’m also giving you a combination folic acid and vitamin B to help combat the side effects.”

Blink. Chemo???

“We’re going to do this for two months and then re-evaluate to see if you need a biologic. How do you feel about giving yourself shots?”

Blink. Giving myself shots? For what? I don’t even know what it is that I have. Please just let me get out of here.

I’d never even heard of rheumatoid arthritis. When I thought about any sort of arthritis, all I could picture were the elderly folks my church youth group would visit with at the holidays and my great grandmother. I mean, think about it: that’s generally what’s shown in advertising. At the time, I had no clue that there were many types and that they could affect people my age.

To make matters worse, after getting home from the doctor that day, I decided to “educate” myself on rheumatoid arthritis. How, you ask? By using the END ALL BE ALL most reliable and authentic source of all information in the entire universe: ye merry olde interwebs. Needless to say, I was much better off “uneducated.” I had no idea at the time that there was such a general misconception of what RA is. To this day, I see pharmaceutical ads on TV and in magazines that are just wrong. Hello Enbrel ad from 2009- I shall never forget you. But at the time, I took them as fact.

So I cried for hours and then took my raccoon eyed self to the mall where I dropped $200 on the cutest pair of incredibly fugly orthopedic dress shoes. I remember thinking ‘so, I guess this is life now. So long running.’ Then I decided my best course of action was to hide this from everyone and would continue to do this for over 2 years.

Let’s just say this was the worst decision I could’ve ever made a decision that made everything harder and based on my own uninformed ideas and leave it at that, ok?

So, what does Rheumatoid Arthritis look like?

Specifically, Rheumatoid Arthritis was 26 on that day. A friend, a daughter, a sister, a coworker. Loves running, kickboxing, reading, dancing. Very reluctant to let go of any of these things. Very sensitive and self conscious when she received a diagnosis that she didn’t think she was representative of thanks to horrible misconceptions.

Except that she was. Right on the money actually.

Demographically, RA is 20 – 40 at onset and two to three times more likely female than male. Rheumatoid Arthritis is an autoimmune disorder in which the immune system attacks joints. It is chronic yet also very treatable through combinations of very strong medications with many patients (yours truly included) able to eventually return to almost normal.

Yet the arthritis the public generally attributes to ALL autoimmune arthritis conditions is osteoarthritis- the condition caused by wear and tear from aging or overuse and the ONLY one where “just go take a Tylenol” may yield positive results.

That’s frightening.

“Buckle Me Up!” International Autoimmune Arthritis Movement is an up and coming non-profit dedicated to helping those suffering from autoimmune arthritis conditions by increasing understanding and awareness through education, partnerships, and support. We are trying to raise money to finance legal fees and startup costs associated with filing 501(c)(3) paperwork.

I can’t imagine how much this would’ve helped me when I was newly diagnosed. Having information and support and people to talk to would’ve made everything so much easier and less scary. And believe you me, it was a very scary and lonely time.

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That sounds like a hard way to get a diagnosis. Wouldn’t it be nice if doctors would take the time to explain what a diagnosis like this means? I’m starting to think they don’t even realize that they’re not doing it.

I hope Buckle Me Up is successful in creating more awareness. Which I hope leads to making it easier for all of us to cope.

I don’t think it’s easy to get any diagnosis but the lack of awareness made it so much worse! I’m so excited about all the possibility that Buckle Me Up! holds- thank you for your participation and support!!!

I was diagnosed when there were no Internets. I was also in a foreign country, working on a U.S. Army post as a civilian. There was almost NO information available to me about the disease, and my doc didn’t offer much. I didn’t know what questions to ask, even.

It is so much better today. But even with the Internet, most people don’t know what RA is. Or lupus. Or scleroderma.

I also hope that Buckle Me Up gets a good start this year and continues to grow over time. We need this organization. I’ve given my $10 to it, Amanda, and I’ve posted a story and info about it on both my blogs, RheumaBlog and Blue Wren.

Thanks for including me in the campaign and letting me make it mine, as well.

Sometimes I think it would be easier without Internet because of the quantity of just plain wrong information! Although, how would we be blogging? 🙂 Thank you so much for your donation and support- I truly think this is going to make a difference for all of us!

Amanda –
I LOVE your blog…you are such a brave soul and what you are doing is so important. (Not to mention…you have the best sense of humor – you crack me up!)
Miss you in Greenville…come back and see us soon. Please let me know if you need anything!
Smiles 🙂
Sonya Rigsby

I definately can relate to your feeling about when you got your diagnosis. If anything, I wanted to hear from one doctor telling “it would just be alright.” For some reason, RA’ers are not offered hope by the medical community. In additon, there is just not enough correct information out there. I mean, tell your rheumy you have hip pain and you are told that hip pain is a not a symptom of RA, but the millions of people who suffer from disagree. What about the medical research that insists that weather plays no part in our RA symptoms, but most RA’ers can tell you otherwise. I think that the hardness part of RA is the grimness along with the lack of answers.

Hopefully, with awareness will come better understanding, and with better understanding, we become closer to a cure.

That is so true- hope is unfortunately not offered frequently. Which is a shame because there has been a lot of innovation in recent years. Even a “you may respond well to this and if you don’t, we have other things we can try” would make a difference. I had a rheumatologist look me in the eyes and tell me that mtx wasn’t making me bruise or fatigued- that it could only make me nauseous. Yet the literature his office gave me before I started it said otherwise….it can be infuriating, especially with all the support and compassion other conditions receive. (Not to knock those at all!)

Im not in the US but have been reading about Buckle Me Up from Sara Nash’s blog and have decided to support them because the world is so small these days and we have to support each other! I’m in the ‘early days’ of diagnosis myself and it’s horrific, emotionally. The internet has been good and bad though. Great because of blogs like yours and Sara’s. Bad because some of the info has scared the crap out of me, sometimes ignorance is bliss?? Ha. Anyway, take care!

Hi Nadia- you’re so right- the world is so small and especially in this community, sometimes I feel like all we have are each other! Hang in there- things will get better. I’m looking forward to a day where being newly diagnosed with this is so much less scary because IAAM is there to provide information and awareness!

Amanda, thanks so much for sharing your insight and experience with being diagnosed with RA. I too had the misconception that arthritis was something only elderly people get, but rheumatoid arthritis can happen to anyone. It is so true that people looking for medical information on the internet will often just end up frightening themselves, overwhelming themselves or misdiagnosing themselves. I was wondering, do you use any mobility aids as a result of your RA?

Hi Andrea, Thank you! No, I do not use any mobility aids in the typical sense. There was a period of time where I probably should’ve used a cane but didn’t. I do have a few things I use in the kitchen- electric wine bottle opener , and another contraption that helps me open tight bottles. But those are also things I had problems with before RA!